A mother chained up her autistic son. And I understand why.

This month, a Blacktown mum Fawziya Adam was sick and had to go to the doctor.

The mother of five was a carer for her autistic son. Instead of taking him to the doctor with her, she decided to chain him up.

“I used to take him everywhere with me,” she explained to Fairfax, “but now he is strong.”

“This time I was scared because the last time he ran away and pushed me and people in the street and the chemist. That’s why I didn’t take him with me.”

The boy was discovered chained in the home by workers from Josephite Community Aid after they made an impromptu visit. They heard the boy calling out and tried phoning his mother numerous times before contacting emergency services who freed the boy and took him to hospital.

His mother said said when she returned home and saw what was going on she became scared, thinking there had been a fire.

She was arrested and later released without charge. “If I didn’t tie him like this, he would run away in the street, no coming back. He would go and not stop,” she explained. “The cars are dangerous and he doesn’t understand about cars. That’s why I was scared, the cars would hit him.”

Our country is in crisis when it comes to Autism Spectrum Disorder (ASD). It is now the most common developmental disorder in the country, with 1 in 100 Australians affected. Nicole Rogerson from Autism Awareness Australia says Ms Adam’s story has highlighted just how much some families are struggling. “The horrific stories we have heard only prove that more,” she said. “Families are in crisis, children aren’t being given appropriate intervention and now we can say lives are being lost. We have a lot more work to do.”

ASD is known as a “complex developmental disability” that affects the brain, making communication and interacting with other people challenging. Government funding for ASD is severely limited, leaving low-income families with no choice but to fend for themselves or reliant on already overly-stretched community programs.

Adam confirmed her son should have been in school that day but she’d been too ill to take him.

The backlash against the Blacktown mum following the discovery of her son chained to his bed was immediate, made worse by the current trial of a mother charged with manslaughter over the death of her 11-year-old autistic son in 2011. The boy died after allegedly being given a cold shower and left in a backyard shed. The mum has spoken about the difficulty she and her partner (the boy’s stepfather) faced in trying to care for him, saying they regularly restrained him for his own safety and that they were not coping with his care.

The reality is that when a family is caring for a severely autistic child who poses a danger to themselves and others, there is little to no support. Most are doing their best, as seems to be the case with Adam, while others fall very short.

My son Giovanni has been diagnosed with ASD. While his autism is mild, he faces challenges each day that are becoming worse.

Despite being diagnosed three months ago we are yet to begin treatment simply because we haven’t been able to afford it. I assumed a combination of Medicare benefits and my own private health insurance would cover at least half, if not more, of the cost of Occupational Therapy and Speech Therapy. But I was devastated to discover that they each cover very little, around $1000 out of $8,500 each year. The majority of funding for autism treatment finishes when a child turns seven, because apparently they are magically cured at that age. The Carer’s Allowance is only available in extreme cases and is difficult to apply for.

Parents are left to try and figure it out for themselves and to be honest, we’re all guessing and making it up as we go along. Sometimes we manage to find a pediatrician who is willing to bulk bill and join the long waiting list to see them. There are other services we’ve put our names down on very long lists for, and we have our fingers and toes crossed that one of them will find a place for our children.

There are a couple great organisations who are attempting to assist families with autistic kids. One is Autism Spectrum Australia (ASPECT), an organisation focused on providing services for autism and other disabilities. “Our specialised, evidence-informedschools program is the largest in the world, with additional services that include information and advice, diagnostic assessments, behaviour support, parent and family support, and adult programs.” They run a school for children with severe autism and have set up satellite classes for less severe autistic kids in the Catholic school system, however the average wait for a place is two years.

Giovanni is on that waiting list. After filling in all the paperwork and paying $150 for a spot on that very long list, all I can do is pray he gets one. Then, if they do manage to place him, I have to come up with approximately $6000 to pay for it. ASPECT aren’t at fault. They are doing their best to keep up with demand and started three new satellite classes in the Western Sydney area this year – but they, too, are reliant on government funding and the government isn’t increasing funding as diagnoses of autism dramatically increase.

Then there’s Autism Awareness Australia. Founded in 2007 this organisation aims to, “increase awareness of autism in the community by providing targeted educational programs for parents and professionals, and advocating for the needs of individuals on the spectrum and their families.” Nicole Rogerson is the founding Director and CEO of Autism Awareness Australia. She began the organisation in 2007. Her own son was diagnosed with ASD in 1999.

A mother is currently on trial over the death of her autistic son who has been given a cold shower and left in a shed.

Rogerson has been quite vocal in her support of the Blacktown mum, explaining how little support exists for families like this.

I spoke to her about Ms Adam and her son:

Do you share my sympathy for the Blacktown mum?

For some, neglect is neglect and we should call it out and condemn it every chance we get. I understand that view but I simply don’t share it. We need to look at this family and their situation in full and how we as a community and society let them down. Judgement is easy and rude comments on Facebook are easy. What is hard is the messy and honest analysis of how we take care of our loved ones with autism and how we can prevent this type of tragedy happening again. Looking at this through a simplistic black and white paradigm loses us the opportunity to investigate, discuss and design a better future for Australians with autism.

I’m up for that frank and fearless chat, our kids desperately need us to have it.

Why isn’t there much support for parents dealing with ASD kids? They seem to be very much on their own and if they are working, have more than one child or don’t have much money, it seems like they are doomed?

In my mind, autism keeps getting thrown into the ‘too hard’ basket. It is pushed between health, disability and education portfolios without anyone taking responsibility for it as a National issue. The Government will argue that this will be fixed by the NDIS – but that is a very big ask given the NDIS (by their own admission) isn’t responsible for the services children receive at school (that would be a State Government issue). That is a huge problem as those of us who work in the field and the parents know just how badly the vast majority of the state education systems manage this.

Government funding ends when a child reaches the age of 7. Why is that? It’s so frustrating because my son was only diagnosed at 7, however I suspected he was autistic from the age of 4 and now I’m left kicking myself.

This is one of the craziest policies introduced which i am happy to say is coming to an end with the roll out of the National Disability Insurance Scheme (NDIS) across Australia. The original policy was recognition of the importance of early intervention, however they didn’t take into account that for many children with higher-functioning (previously Asperger’s) autism, then diagnosis was often not until the age of 7 or later. In saying that, the exisiting government funding is completely inadequate and as such isnt giving children the individual help they need. Essentially – in my mind, this funding has been squandered on low quality, non-intensive interventions which never met Australia’s Best Practice Guidelines on what intervention should look like. The NDIS should give families more funds and will certainly give them more choice and control.

Some children with ASD exhibit challenging behaviour. Isn’t this a major issues for parents trying to care for some autistic children?

The autism spectrum is very wide and affects people very differently. For some people with autism, they may not have any challenging behaviours but sometimes they can be significant. For an individual more severely effected there can be aggression, self-harm and personal safety issues. The things we do know is that the challenging behaviour doesn’t have to remain an issue for individuals on the spectrum. Good quality supports and teaching from Behaviour Analysts and Psychologist can be life-changing when introduced effectively. This is the most frustrating part for me…that parents don’t understand things can get better. They don’t have to live in crisis. In saying that, you’ll only get that professional support right now if you have the funds to hire it.

The cage that was used in a Canberra classroom as a ‘time out’ space for an autistic student. The cage has since been removed.

Parents are not qualified to deal with autistic kids however we are forced to figure it out and learn as we go. What free or affordable assistance is there for parents of autistic kids, that they can access now?

This issue drives me nuts as some autism organisations claim the best ‘intervention’ should come from parents. Utter bollocks! We are not trained, we don’t know what strategies are scientifically validated to be the most effective for our child. Look at it in the medical model. If our children were sick in hospital would the doctor suggest we treat them? No, we need professionals, trained autism specialists to help us. Only then will we see real, meaningful help for our kids. Right now that type of assistance is available but my goodness you’ll need a working credit card. Public services are few and far between and often of low intensity and poor quality.

Clearly much more needs to be done and families dealing with autistic kids will just need to wait and hope.